Thursday, September 30, 2010

My husband is a very private man. I am not. His 93 year old mother went into the hospital a week ago Monday and she is gravely ill. As my father passed away just this past March, at a similar advanced age, of a very similar condition, after spending much time at the same hospital, seeing some of the same doctors, you can see I might be having a lot of feelings right now.

My feelings are mine, but the situation at hand is my husband's. And I am trying to walk that fine line between respecting his privacy, honoring his need to own the story of his mother, while still finding a way to talk about what I am going through right now. Which is completely tangled up in the story of my husband and his mother. His story.

So there is much I cannot say. But I will say this: there is nothing easy about this time.

We wait. A lot.

For doctors. For nurses. For phone calls.

And there is so much that needs attending to in our lives. We carry bags and briefcases full of important-stuff-that-must-be-done. And they sit unopened. Waiting time cannot be filled.

It feels empty, but it is not empty. It is full. Of waiting.

The mind jumps around, cannot concentrate for long; it alights on memory's branches, leaps off again. We flit between past, present, and future, settling nowhere. We stare into space.

When there is so much feeling, sometimes there is its absence, too. The lid so tightly clamped onto the kettle, furious boiling contained. For now.

I hold my husband's hand. I hug him tight. I want him to know he is not alone in this. But of course he is, too.

I think a lot about my father, and remember again how it felt to watch him slip away, how there was that point when he was really no longer my father. At all. But then there would be a moment, and I would hold onto that one, a firefly cupped in my hands, winking its delicate yellow glowy spark into the darkness, until the next.

Wednesday, September 29, 2010

Yesterday I visited my 93 year-old mother-in-law in the hospital. It was my first visit of this particular hospitalization, as I have been busy holding down the home front so my husband, Danny, could spend as much time as possible with her.

“Sure”, I’d said when he gave me the pavilion and room number. “Easy, I know that ward, see you there around noon.” Bustling about, trying to wrestle order from chaos in our apartment, I did not stop to think for a moment why I knew that ward so well. So it took me by complete surprise when I burst into tears as I rounded the corner to approach the cardiac care unit.

The one where my father had spent much time in the last year of his life.

He didn’t die there, but still, it was full of memories.

Ghosts.

Echoes.

So here, I want to pay tribute to him once again.

This is one of his important photographs:

Jim Steinhardt
Woman in Greenwich Village Cafe, 1948

And this, his most well known, "signature" photograph:

Jim Steinhardt
Cement worker, 1955

Here is another legendary one:

Jim Steinhardt
Pearl Seller, 1947

He loved to photograph children at play :

Jim Steinhardt
Girl Playing Hopscotch, 1950

Everyone loves this one:

Jim Steinhardt
Coffee Shop Santa , 1949

Finally, here is my father last year in September, on my Mother’s birthday, during our last good family time. By Thanksgiving he was really ill, by the spring, gone.

Dad, September 2, 2009

Good bye again, Dad. I was thinking of you today, mourning you anew.

Remembering how I would tape up Xeroxes of your photos around your hospital beds to cheer you up. So we could look at something of beauty in that place of pain and diminishing. And so we could show the hospital staff “The failing body in this bed was a person. This old man was somebody. This is the man who took these beautiful, astonishing photos. Treat him well.”

If you would like to see more of my fathers photos, look here. And if you would like to know a little about his life, here is my eulogy that I read at his memorial service this past March.

Sunday, September 26, 2010

Anyone who says autistic kids have no sense of humor has clearly never met my son, Jacob. That’s the danger in making generalizations about autism. As the old saying goes: if you've met one kid with autism... you’ve met one kid with autism.

Jacob right now is in an awkward phase of wanting to relate all the time but having no sense whatever for what are appropriate and inappropriate ways to connect. He has no innate inner compass to guide him, and taking lessons from his often highly inappropriate twin brother Ethan is, shall we say, problematic.

A while back Ethan taught Jake to say "poopy-head" which is why when Ethan comes to me complaining that Jacob is sing-songing the phrase "Ethan is a poopy-head, we like you very muuuch" over and over, I tell him: "You're not getting much sympathy from me on this one, kid. You taught him that lovely term, so it's you own damn fault."

And no, I don't actually say "damn" to my kid. I just think it very loudly.

And then I tell Jake to stop it, that it's not OK to tease, that that is NOT a nice word to use. So "poopy-head" goes underground for a while, but you never know when it's going to surface again.

Last night Jake got to bed late, even later than usual for a non-school night. We listened to the radio during his bath because Jacob has a great love of music and seems to not mind his mother's off-key crooning along. There may have been some dancing mixed in with the drying off and the donning of the PJs, for, you see, great songs just kept on coming on every time I was about to turn it off.

And I know it's hard to go from dancing right to bed, but when his eyes light up and he enjoins me with a "Dance with me Mommy, pleeeeease?" how can I resist?

How can I resist engaging in joy with my son, for whom so much of his day is lessons, lessons, lessons, and directives. Jacob hears all day long: "do this, do that, don't do that, stop, STOP!, for heaven's sake don't do THAT."

So I said "Yes" and we danced away, bouncing, wriggling, stomping and wailing. "Stop in the name of love, before you break my heart..."

And then of course, a glance at the clock and: BED, NOW!

Jacob has, historically, always been my easier son to put to bed. He climbs up into his top bunk, blue-bear is located and securely crooked underarm, we sing our two requisite songs; I tell him about the day that has been in the form of a story ("once upon a time there was a boy named Jacob...") and then let him know what's coming up ("And what's tomorrow, Mommy?") a kiss and he's gone.

"Goodnight Mommy, tomorrow's another day."

But lately his spunk has been rising, and the compliant, perhaps too compliant little boy is falling back a bit as Mr. Sass is starting to feel his oats. And I know this is all for the good, that typical eight-year-olds are not nearly as sweet and obedient as Jacob has been, that he is veering toward normal as his feisty gently rears up.

A large part of me is grateful, cheering him on even, while another part (the one that is already short on sleep) is groaning, bitching and moaning. I know that for Jacob to grow into his own, the ways in which he is pliant and "easy" will have to fall by the wayside for a while. I even wrote a post about how happy I was that he learned to "cuss" when frustrated.

But the teenage years? I don't even want to think about that yet, though they loom, they loom.

So now, at bedtime, instead of meekly marching into his room when Mom says "Bed, Jake", I'm getting the "No", the "I hate bedtime", the "I don't want to go!"

And then last night, in spite of being in the giggliest of moods, post dance-marathon, he starts sweetly singing our first bedtime song as he climbs up into his bunk, seemingly without too much protest.

Therefore? In the eyes of my 8 year old son, Ethan? Jacob is hogging all the attention, which is supposed to be HIS job.

So here he is: Ethan, in all his glory.

First day of 3rd grade:

Yes, I know he's in clashing prints, Yes, he picked that outfit out himself, and Yes, that's his (unique) fashion sense. Someday you will be paying thousands of dollars for amazing things he's designed, so suck in the judgment.

Thursday, September 16, 2010

Today I saw the man in the boy, caught glimpses of the beautiful man he will become. I had picked him up from his new school, and we were sharing a snack and sunshine in one of the city’s delightful pocket parks. Jake was sitting on the rim of a fountain. His glasses had gone dark and smoky in the brilliant afternoon light, so I couldn’t tell if his gray eyes were reflecting back the blue of the sky or the green of the trees, they shift so.

He was happy in a quiet sort of way. I looked at him and saw him, not just my little boy that has always been, but this boy now. Bigger, older, handsome in his somber uniform of white and navy blue. There was a teenager-like stillness in him, observing the world while munching his chips. It was one of those perfect September days New York City sometimes throws at you: the air crackling, warming in the sun, cool in the shade, and Jake so cool in his shades.

I know it may sound strange and shallow, but I thank my lucky stars that he is handsome. Because humans? We are strange and shallow, we forgive more from the good looking. We spot them a few points, we give them the benefit of the doubt, assume they are better, smarter, toss them a free pass. Statistics prove this, it’s a favorite social science study subject: how anything attached to an attractive photo is scored higher than the exact same content tied to the ugly. Human nature. Which will work to the advantage for my son’s future, so it is forgiven. “He’s a little weird, but so handsome, let’s let him in the club.” See?

I’ve been sporting a lot of fantasies of this future lately, seeing as he’s on the cusp of so much change. Jake’s finally at a school that is setting the bar nice and high, and he seems to be rising up to the challenges. The limit? Pure blue September sky.

Inspired by a Scooby Do episode Jacob recently announced: “I want to be a rock star, Mom, I want to go on stage, can I go play on stage?” And I had an epiphany. What a perfect job for Jacob that would be: drummer in a rock and roll band. He would make a terrific rock star. Large, handsome and strong, he is very musical, loves to sing, has great rhythm. And? Drummers? No one expects them to talk much. And all that banging and stomping? He’d be getting his sensory needs met while having a blast. His maniacal laugh, his big, big over-the-top personality? Rock and roll, baby! I’m smelling a win-win here.

Next step: get him a drum set. And pray the neighbors are deaf, understanding or better yet, both.

My son, the rock star. I could live with that.

(For those of you living in NYC who are about to call me out at the “brilliant sunshine” reference on this gray and stormy day {Brooklyn Tornado!}, I hereby confess that the actual “today” of this post was yesterday, Wednesday. It took me until now to decipher my chicken scrawled notes and get it up on the computer. Freaking sticklers.)

Wednesday, September 15, 2010

Last week we celebrated Rosh Hashanah, as we ushered in the Jewish New Year 5771 (we've been around a while y'all).

We went to my elderly mother-in-law, Blanche's apartment to dip apples in honey, symbolizing our quest for a sweet year. This will certainty be her last, and we tried not to drown in bittersweetness as we lit candles, blessed challah, and kissed her very gently.

The next day we were off to a post-services lunch in New Jersey, a small gathering that included 60 or so of Danny's relatives. Did I ever mention my husband comes from a LARGE close-knit family? Did I mention we affectionately refer to them as "The Borg Collective"? (Star Trek reference revealing my true geek nature here.) And while Blanche was clearly too frail to travel, we happily brought my mother along.

The one positive thing my father's passing has brought about is the opening up of my mother's life. In the past few years, his increasing fragility kept him mostly home-bound (a sorry state for my adventurous far-traveling father) and Mom's loyalty to him kept her from leaving him behind, even for an afternoon ("But honey, he'd be so lonely.") My mother does so love nature, and it was good for her soul to bring her out of the city last Thursday.

Coming up is Yom Kippur, the somberest of days, when we close out the old year and open up the new. When we particularly mourn our dead. I will be saying goodbye to the year my father died. I will be stepping into this new year, this 5771, fatherless, lightened of the burden of his care, but heavy of heart.

I will hold my mother's hand and feel the heaving of her shoulders as she cries again for the man she dearly loved, her true partner. My mother, too is both lighter and heavier now. She is slowly coming back to life, and I will help her move forward into to this new year, help her fill in the empty spaces with grandchildren and greenery.

Monday, September 13, 2010

Jacob had a pretty terrific first day at his new Special Ed school. The woman who greets the kids at the door, who helps them off their buses (when we finally get his bus service functioning) is the warmest, kindest, friendliest woman on this planet. And she’s one of the assistants in his room. His teacher? Equally lovely, smart and caring. So far so good.

But it’s barely skimming my surface today.

I was up nearly all night. Moving slowly, unfocused, sleepwalking through finishing up all the things that needed to be done to settle Jacob into his new school life.

Today is exactly six months since my beloved, frail, elderly father died in March.

He passed between the worlds right at midnight as the 12th slipped unquietly into the 13th, my sister waiting by his now quiet body. She had gotten a final hug, gotten to say goodbye. It was good.

I was states away in Vermont, but that was good too. I had been saying goodbye daily for months, the local, caretaking daughter; the hauling him up off the floor daughter; the change his diaper daughter; the holding my Mom while she sobbed daughter.

And tonight my husband sits by his 93 year old mother’s side in the emergency room, as she too fades away before his eyes.

Tomorrow morning I will have to tell the boys: Daddy’s not here, here’s at the hospital with Grandma Blanche. Ethan will ask if she’s going to die, and I will tell him the truth: probably not today, but soon. He has seen this all before. Jacob won’t understand, he will just be missing his Daddy.

And I know.

I know how that feels.

If you would like to know more about the father I loved and his last months on this earth, please click through the links above to my earlier posts, and to his dealer's site, showing a small sample of his photographic work. Bring kleenex.

Read my thoughts about this transition here, at the Hopeful Parents site:

Reading over my post, I realize it is way light on the "fears" part, other than my struggles to get Jacob with the program over uniforms (ugh, don't ask.) I guess that's because for once in my life I'm trying to not "borrow trouble."

I figure something's going to screw up, probably royally, but since I can't anticipate exactly what it will be, worrying about it isn't going to prevent anything. It's only going to put more gray in my hair, and wake me up with momsomnia, and who needs that?

So, I'm going with cautious optimism here. And I'll keep you posted on how that's working for me.

Monday, September 6, 2010

This photograph of my son Jacob on summer vacation is the first lovely, natural photo of him smiling that has been taken in some time. I treasure it, and it will surely grace my computer screen and wallet for some time to come.

For you see, Jacob is on the autism spectrum, and his interpretation of what to do when a camera is pointed at him, like so much about him, is aimed at, but quite clearly missing the mark for normal, like this:

He tries too hard. Waaaay too hard. So he ends up with a strange wide eyed or squinty grimace, yelling "Cheeeese!" at the top of his lungs, to boot.

Jake used to have a warm, natural smile,

then he started getting spacey in photos,

and now this,

the balls-to-the-walls all out attempt at normalcy that looks like lunacy in it's current manifestation. And I am glad I know (on most days, when I am having perspective) that's what this is, just the current station stop on the long haul from here to there.

Right now Jake is so much better nearly every day in every way, and I feel awful, an ungrateful wretch for complaining about him. I feel guilty, very guilty at not feeling grateful every minute of every day for what a gift Jacob is, and how far he has come. But on that path from here to there, where Jacob is right NOW makes him so much harder to be around than back in the bad old days, when he was spacey and happy to live in his own little world.

Because right now, Jacob, unlike so many other of his autistic brethren wants to interact ALL THE TIME. But he is still so inept at it, is still deep into the steep uphill climb on his learning curve, that an hour with Jake is more work than an hour at the gym, with the volume turned up to eleven. Because to have a meaningful conversation with Jake, you still have to carry 90% of the load.

Jacob’s thoughts and intentions, his imagination and his humor are so much more sophisticated, so ahead of his language capabilities, there is constant correcting and interpreting to do. And then there is the answering over and over and over again of the thousand questions.

Remember three year-olds? That's Jake right now. But he's a 75 pound, 4 foot 6 inch three year-old who will reach up to your face and try to make your mouth talk to him if you dare try ignoring him for a moment. And Ethan, Jacob's twin brother? Really hates and resents having a three year-old for a twin.

There are parents with non-verbal kids who would give their right arms to have the problems we are having right now, I know that. Believe me, I know that and try to remind myself of it every day when he is truly driving me around the bend.

Because this year, due to the vagaries of the calendar and NYS in its infinite wisdom interpreting a 12 month program to equal a mere 6 weeks of summer school, Jacob has had a month, a full month of no school, no camp, no schedule, all-mom-all-the-time. For a month, August 13th to September 13th, he has been, is, will continue to be mine, all mine. And Jacob? Right now? WILL. NOT. SHUT. UP. Really.

And that old mainstay of lazy parenting, television? No go, there. Watching TV is not a quiet, passive activity for Jake, it is an invitation to engage in non-stop commentary and inquiry about what he sees on the screen:

I love my son, love him to pieces. He is full of joy and light and love. He is the happiest autistic person I know. He will skip down the sidewalk, because really, why walk when you can skip? He slips his hand into mine, gazes into my eyes and kisses me ten times in a row, just because he can. He melts my heart on an hourly basis.

But he also asks me every five minutes, all day long, every day, if we can ride the subway train to McDonalds and ToysRUs today. Because we did it once, at the start of break, and he so loves Times Square.

Like a toddler, he doesn't know how to take no for an answer. Actually, Jake doesn't even know how to take yes for an answer, so impatient is he in his anticipations that he will keep asking if he can do something I have agreed to, until he is in the middle of doing it. And then three minutes after it is over, he will ask to do it again.

He will grow, he will learn, he will be able to hold a thought in his head without giving it (loud) voice. But right now this is where we are, neither here nor there, visiting station after station on our ride together.

Next week Jacob will go back to school. Next week my home will be much quieter, cleaner, and I will be able to get things done. Next week I will miss him all day long. Because, you know, I do love cheese.

I am Squashed!

About Me

I am a mother, a wife and a writer. I have a set of 10 year-old twin boys, one of whom is on the Autism Spectrum, while the other has some ADD (as do I). Until recently I was also caring for my elderly, widowed mother, who just passed. Life is exhausting, but interesting. I mostly write about autism, parenting and grief, but I also have a wicked sense of humor, and tell tales from my past.